October 29th Update

Hi there...

So, haven't put an update on here for a bit... sorry Jeri :) Most of you would agree, we can't all be as on-the-ball as Jeri! She's just AMAZING!

Friday's fallen apart plan...

Some of you had heard that I might be going through a treatment on Friday called "Plasmapheresis"... well that ended up being a no-go. In theory it would have served to clean the bilirubin from my blood giving me temporary relief. (cuz, yeah, the itching just about makes me loose my mind at times...) Of course not a fix anyway, since the underlying problem is very much still present. But apparently I would have had to undergo a minor surgerical procedure to place the catheter needed for admininstering the treatment, and since my liver is under stress, my platelets are getting "beat up", therefore I am not clotting like a normal person. (No Tony, that doesn't mean there's now sure proof that your sister is not a normal person :)) so it was going to be too dangerous due to risk of bleeding. I do appreciate them thinking that through! I'd rather be forced to be tough than to do something rash. So they switched my medications up a bit, and the 4 specialists that had gotten their heads together on the decision concurred that the best bet would be for me to just come in so that they could better tend to me there intravenously; yeah, a.k.a. drug you up! An invitation I am not going to jump at! So, I've just been toughing it out... had a nice week-end regardless. Mom and Dad are back from their trip, so they spent the day w/ us which was nice since Joe had an all day event in Portland.

Vitamin D!

I am SO extremely thankful for the beautiful sunshine we've been having :) ..and yes, I do try to get out and soak up as much as I can of the lovely vitamin D every chance I get. Joe has taken me down to the beach a few times and I jog or walk out in it every day. oh yeah, and keep in mind there's always a story behind the story... so if you ever come along unexpectably to find a half-naked rather yellow girl layin on a bench in the fall.... just cut her some slack, okay? She likely has a legitamate reason...(ok, so my scenario was pants and sleeves rolled up, midriff exposed... not too terribly indecent!)

New Supplement

So the latest addition to the regime, some of you have not only heard, but helped tremendously to support, is this product called "Ambrotose". Out of all of the suggestions and success stories from so many caring folks, this is one I have been the most impressed with. Not to mention it is something I knew years ago that I should be on. Some of you are concerned, and I don't blame you, so I am going to try again my best to explain in a simplified nut-shell what the jest of it is:

Here's my feeble attempt at explanation....

Of the 200 monosaccharides that occur naturally in plants, fewer than ten are predominintly used by the body for healthy function. These sugar molecules constitute an "alphabet" of "letters" that can be combined in uncountable ways to form "words" the body uses to communicate information required for healthy function. Glycoproteins are molecules that are combinations of sugar and protein; glycolipids are combinations of sugar and fat. The general term for these combinations beomolecules is glycoconjugates. Glycoconjugates on cell surfaces and in the blood are responsible for cellular recognition processes that enable the body to perform the many complicted functions required for health. Glycoconjugates on the surface of one cell bind to receptors on another cell, which allows the cells to communicate with one another. This is called cell-to-cell communication. Glyconutrients also constitue important parts of glycoprotein molecules in the blood (rather than attached to cells). So amongst other benefits, particularly in my case this product will likely:

• Enhance immune system function.


• Encourage proper communication amongst cells as in self vs. non-self. (Since my PSC is an autoimmune disorder, this straightening out of what to attack is a very good thing)


• Inhibit growth and/or tumor cell metastasis in certain types of cancer.


• Inhibition of cancer growth by glyconutritional sugars, such as mannonse, appears to be partially related to immune system activation of natural killer cells, a type of white blood cell that destroys cancer cells.


• Glyconutritional sugars appear to inhibit tumor cell metastasis by preventing the attachment of tumor cells to normal cells by competing for glyconutritional sugar binding sites on the cell surfaces.

Sorry Leslie and others who understand it better if I completely botched that definition!

I've had numerous first-hand stories shared w/ me of people who have faught cancer using this product. Two things not to worry about- One- Completely safe! NO amount of this stuff would kill any lab rats! Therefore it can't be given a FDA lethal-whatever-it's-called rating and called a "drug", instead it's a "nutritional supplement". TWO- Don't worry, my plan is not to just throw all my eggs in this basket, and hope like heck it works. Some of the great stories come from people who have used only these alternative treatments alone, but more frequently, I believe, are those who used this product to boost their immunity to a level that enabled them to tolerate the chemo and radiation so much better and ultimately emerge victorious! Now THAT's the plan! The victorious part :)

On that note, I'm off now to VM to have the apt w/ 2 experts of the Photodynamic Therapy... let's see what they've got! I'll let y'all know.......

LOVE YOU,

Tracey